Hospice Motor Neurone Disease services (MND)
Ipswich and East Suffolk have an MND coordinator, Kate Barber, who works for East Suffolk and North East Essex Foundation Trust. This role works closely with the Hospice to ensure support is provided from as early as diagnosis.
Funded by the ICB and supported by the MND Association, this post was established to enable the NICE guidelines for MND patients to be met.
Specifically, Kate's role is to provide information and support for people and their family members and/or carers throughout the diagnostic process, particularly during periods of diagnostic uncertainty or delay.
When MND is diagnosed, Kate is there to provide people with a single point of contact for the specialist MND multidisciplinary team. We provide information about what to do if there are any concerns between assessments or appointments, during 'out‑of‑hours' or in an emergency, or if there is a problem with equipment.
The role is intended to allow support for patients and families wherever they are located (home, hospital, nursing home).